Sergio

Sergio Alejandro is 10 years old; he is a very cheerful and very tender boy. He loves animals, he cares about others, he likes music, dancing, art, playing video games, archery, going to the beach (but he doesn't like the feeling of sand) and he is a very good swimmer (in pool). From birth to 3 years there were no symptoms, his development was apparently normal. From this age he started having vague and very general symptoms such as delay in language and social level, he preferred individual activities, he stumbled when running, most of the times he got tired faster than other children, he had shorter attention span and poor structuring in school activities, even so with the help of therapy he learned to read and write well. It was until he was 5 years old that he began with symptoms such as loss of balance, gait and language alteration in a very evident way. These episodes lasted seconds or minutes and were sporadic until they became daily and constant. He was 6 years old when the first well-established crisis happened, which lasted 45 minutes. There was weakness, gait disturbance, language disturbance and loss of balance with contracture of the right hemithorax backwards, presenting a subsequent cognitive decline reflected in school activities, mainly mathematics. From that moment on, multiple studies were carried out, all being normal, and until July 2019, the second crisis with weakness, gait and language disturbances, loss of balance, dysphagia, hiporexia, and sialorrhea did not present again, in addition to abnormal laboratories and electrocardiogram due to what we were referred by neuropediatrician with metabolic geneticist and cardiopediatrician. Sergio was diagnosed with TANGO 2 in October 2019. Accompanying this condition is QT interval prolongation and dysarthria. Until today he is the only one documented in Mexico with this condition. In May 2020 he had a 3rd crisis with a very good recovery and since then he has been stable without any episodes. Sergio has not been hospitalized. His mitochondrial cocktail is based on vitamin B1, B2, E, C, D3, K, Omega 3, COQ10, 30% Levocarnitine and Propranolol for his heart. Eats every 2.5 hours mostly the diet is carbohydrate monitored by his nutritionist. He has always remained within normal weight and height percentiles for his age. He has cognitive behavioral therapy, physical therapy, language therapy and structure of communication and swimming. Sergio goes to primary level in normal school with constructivist methodology accompanied by a teacher guide because the structuring is very complex for him and some days needs to remind (or repeat) things he had already learned. Now he is aware of when to stop his physical exertion and rest, when he needs to eat, and when to take his supplements and medications. Sergio has a younger brother named Elias and he does not have the disease. Elias is now taller and stronger, he helps to take care of Sergio. We are grateful to be part of this foundation and to find this great family from whom we receive a lot of information and support. We understand and share what other families go through. We are here for you too. And like everyone else, with the expectation and confidence that researchers and scientists will find a treatment that can lead to a cure.